My previous two posts lamented the incredibly bad the documentation I get from a local hospital is. In truth, the documentation I get from everyone is terrible. Seldom does it tell me what I actually want to know, and if there is useful information it is buried in an avalanche of yada yada. The main reason for this is that documentation is driven by our ridiculous payment system, which requires us to follow arcane rules to generate notes that justify the obscure codes we submit for money from the payors. This is the reason for much of the gibberish. These rules, combined with computers' ability to quickly and efficiently generate drivel (see also The Entire Internet) are the hot house and Miracle Gro for meaningless words. Sprinkle the rules on a computerized medical record and stand back! Useless words and codes will spew out at you like milk from the mouth of an overfed baby.
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Good news: my local hospital has the fanciest, newest, coolest computer system (costing major bucks, of course) and now is routinely sending me "transition of care" documents on my patients.
Bad news: they are horrible.
Seriously, we get several of these documents per day and often can't figure out what the document is about. On the bright side, sometimes after taking 10-20 minutes of looking through the 12-14 page document, we do actually gain some useful information.
Long-time reader, first time writer! I want to know why it is that my doctor makes me pay to get my own medical records. It seems like since they are my records, they should be free to me! Can you explain this to me?
- Lucy in Texas
Thanks, Lucy, for asking such an astute question that is near and dear to my heart.
There is, in fact, a simple answer as to why doctors don't want you to lay hands on their medical records, Lucy. It's the same reason you don't want your son's underwear after his first semester in college (known to have broken autoclaves): they stink.
Why do they stink? It's complicated. The best way to see this answer is to look into the past. Way back.
When I say we need more tech, I am not saying we need more computerization so we can produce a higher volume of medically irrelevant word garbage. I am not saying we need to gather more points of data that can measure physicians and "reward" them if they input data well enough. The tech I am referring to is like that I used regarding my father. I want technology that does two things: connects and organizes. I want to be able to coordinate care with specialists and to reach out to my patients. I want my patients to be able to reach me when they need my help. Technology can do this; it sure did for my dad.
So, the question has been raised: why am I doing this? Why re-invent the EMR wheel? What is so different about what I am doing that makes it necessary to go through such a painful venture? I ask myself this same question, actually. Here's my answer to that question:
What medical record systems offer
What I need
High focus on capturing billing codes so physicians can be paid maximum for the minimum amount of work.
No focus on billing codes, instead a focus on work-flow and organization.
Complex documentation to satisfy the E/M coding rules put forth by CMS. This assures physicians are not at risk of fraud allegation should there be an audit. It results in massive over-documentation and obfuscation of pertinent information
Documentation should only be for the sake of patient care. I need to know what went on and what the patient’s story is at any given time.
Focus on acute care and reminders centered around the patient in the office (which is the place where the majority of the care happens, since that is the only place it is reimbursed)
Focus on chronic care, communication tools, and patient reminders for all patients, regardless of whether they are in the office or not. My goal is to keep them out of the office because they are healthy.
Patient access to information is fully at the physician’s discretion through the use of a “portal,” where patients are given access to limited to what the doctor actively sends them.
A collaborative record, sharing most/all information with patients so they can use it in other settings for their care. Also, I want patients to have edit privileges for things they better suited to maintain, like medication lists, demographics, insurance information, and past history items.
Organization of information is not a high priority, as physicians are not reimbursed for organized records. The main focus is instead on meeting the “meaningful use” criteria, which gives financial incentive to physicians who use a qualified record system.
Since the goal is to share the record and to maximize care quality to make communication more efficient, organization of the record is crucial. The goal is to put the most important information up front and to give easy access to the details sought. I am the “curator” of the record, organizing it and prioritizing information in a way that is useful to both me and my patients.
Top priority is paid to billing workflow, with second billing given to in-office patient management (not apparent to most patients). The least attention is given to clinical workflows for patients outside of the office.
My priorities are 180 degrees from this. My top priority is keeping people outside of the office healthy and happy (which will keep them paying their monthly payments), so maximizing organization and communication need to be the focus of my records. Certainly in-office care needs to be efficient, but not in the same way as the rest of the healthcare system (efficient documentation for payment); it must focus on getting the most accurate information into the system and making it easiest to get information out. Billing is almost a non-issue, as it is very simple in my system.
Task management is again a low priority, as it increases potential non-reimbursed work for physicians (and staff) in the typical office. For example, there is not much emphasis put on phone office follow-up or making sure the plan is communicated to the patient. This is not strictly avoided, as most medical professionals do want to give good care, but the high-stress overworked atmosphere in most offices makes most medical personnel reject any tool that gives “extra work.”
Task management is near to the top. I am focused on coming up with a care plan for each patient and making sure the patient understands that plan. The goal is to reduce the chance of misunderstanding, as it increases my work and decreases the patient’s chance for health. So an integrated task-management tool is very important, as is education resources which can be accessed directly from the patient record and given to the patient to keep (ideally) in an online “folder.”
Mobile communication is becoming more available, but it is very much system-centric, meaning that it is built by the EMR vendor to only be used by patients of physicians who use that EMR and to only be for viewing information from the physician, not as a patient-centered tool.
My goal is to give patient access to accurate medical information and access to me in a way that is easy and efficient. Mobile technology is the most obvious means to this end. I want patients to be able to access their entire record, not just what I generate, from a mobile application (or at least a web application). I want any place they get information to also be the communications hub, as it allows them to communicate with as much information as possible. In short, I am looking to have a “one stop shop” for all patients’ needs, not a “walled-garden” that only gives them access as long as they see a doctor that uses the system.
Payment for health services generally depends on two things: a problem being treated and a procedure code. These are both, therefore the focus of the record system. Problem lists are in the record, not primarily because they help with care, but to allow billing for services.
I believe we should focus far more on reducing risk factors than on treating “problems.” My goal is to avoid problems and do fewer procedures when and where at all possible. Problem lists should not be focused on code, but instead to give the most accurate information to lead to the best decisions, and to help understand the risks the patient faces so problems can be avoided. If this happens, I will have less procedures, a fact that will make both me and my patients happy.
Optimistically, the ultimate goal of the typical EMR is to allow a physician to practice the best medicine possible while not going out of business. It allows physicians to give good care despite the system that rewards them for bad care.
The goal of my record system is to promote the success of a new business model: pay doctors more to keep people well and to keep people out of the rest of the health care system. The ultimate goal of this record system is not to make money for me as software I can sell, but to make it so I can extend the model efficiently to a larger population, ultimately making this new system of care an attractive enough alternative to physicians, employers, and patients to make the switch. Perhaps in doing so the “do more, spend more” system can be replaced by a welcome alternative.
So here is the goal:
- Create a prototype of a system that allows me to give my system of care efficiently to a large population.
- Use that prototype to “prove concept” - that the care I give is better for patients, better for me, and saves money.
- Create enough interest in the model that people are willing to develop the system. I think this is best done through making it open source and setting up a foundation to fund the program (and let me gladly hand it off to people who are better at this than I am).
- This will ultimately lead to more adoption of the practice model (by making it easier to make the transition), which will in turn lead to more interest and funding in the software.
I don’t believe we can retro-fit a standard EMR product to do this job; I think their focus is too different from the goals of this practice model. I may be wrong, but I looked at numerous systems and found that they fought against my goals instead of enabling them. I turned to this idea not out of ambition, but out of a desire to survive and see my practice model succeed.
A patient calls or emails me with a problem. I talk with them over the course of a few days, using whatever form of communication works best. Eventually, they need to come to the office to be seen - either for something needing to be done in-person (examination, procedure, or lab test), or because of the advantages of face-to-face communication. At the visit, I not only deal with one problem, but there are other issues needing to be addressed. Finally, after the visit, follow-up on the problem continues until it is either resolved, or at least is not causing much trouble.
So how do I document that?
In the past I would've had a clear structure for the "office visit" and separate "encounters" for the documentation of the communication done outside of the office. The latter would be done largely with narrative of the conversation, and some direct quotes from the patient. The former, the "office visit" would include:
- A re-telling of the story of the "chief complaint" and what's been happening that caused this encounter to be necessary.
- A sifting through other symptoms and past-problems to see if there is any information hidden there that may be useful.
- A documentation of past problems (already in the record) to support the thought process documented later in the visit.
- An overview of the physical exam, again to support the decisions made as a result of the visit.
- A discussion of my thoughts on what I think is going on.
- A telling of my plan on how to deal with this.
- A list of any advice given, tests ordered, medications changed, prescriptions written, and follow-up as the details of that plan.
- A signature at the end, attesting to the validity of what is contained in the note.
But here's the problem: it's not real. I don't make all of my decisions based on the visit, and the patient's story is not limited to what they tell me. Details may be left out because they are forgotten, questions aren't asked, or things just haven't happened yet. This signed and sealed unit of care, represented as a full story, actually represents only fragments of the story, of many stories actually, and only as a moment on the continuum of the patient's care.
But there it stands, the office visit, the center of the patient's medical record. It is what my past life defines as "health care." But for me now, it is an anachronism: an old-fashioned idea that has nothing to do with my present reality. My care is no longer episodic, so why should my records be? I no longer need "visits" as units of commerce, and no longer need "problems" as the goods for which I am paid. This took me quite a while to figure out, and has me making some radical (crazy?) changes to how I think about care.
1. Stop Artificially Defining Units of Care from My Perspective
The "office visit" is a unit defined from the physician's perspective. This may actually undermine a clear thought process, though, fooling me into believing I've finished something that isn't complete. Instead of breaking care into a temporal unit, why not define it another way:
- The narrative - what is going on with the person. The patient narrative goes over their lifetime, some of which happens in my office. Narrative would best be a combination of patient input and my observations as a third-party. My job is not necessarily to do the narration, but to guide it by asking questions and to prioritize that which I think is most salient. Each "problem" may have its own narrative, but those lines often blur, as the chronic disease causes depression, and both the chronic disease and depression lead to fatigue and increased pain. How do you divide those? Do you need to?
- The investigation - both through my questions, examination, and through tests I order, I work to solve puzzles. The patient wants me to make sense of confusing parts of their narrative, so I step in and investigate. Tests are ordered for a reason, and exams are generally problem-driven. One of the most important "tests" to do is to wait and see what happens. Sometimes stories only become clear as they unfold, and it is my job to know when it's best to do nothing other than wait and observe.
- Interventions - medications, lifestyle changes, education, and procedures are what most people think of when they define "health care." Yet these are entirely driven by the narrative and investigation. They add to the narrative and often become part of the investigation, but they never stand alone. Well, they shouldn't stand alone, despite the fact that they are what doctors are largely paid for in this country.
- Destinations - what are our goals? What is the goal of the patient in the bigger sense, and what are our goals for individual narratives? The destination is the entire purpose of the doctor-patient interaction. The patient doesn't like their destination and I am called on to help them go somewhere else, or they just want to be sure they are not inadvertently going to a bad locale.
Can I do a record based on these categories? If I do, would it end up as a crazy jumbled mess?
2. Find Strings to Tie the Pieces Together
Each part of the record of care is tied together in different ways, with different things that they share with the other pieces of information or narrative.
- Diseases - these were referred to as "problems" in my past life, a euphemism if there ever was one, but part of each record is usually devoted toward the prevention, treatment, or management of disease. Narrative, investigation, intervention, and destination could address these aspects of disease.
- Symptoms - these also (perhaps more appropriately) were listed as "problems" in my past life. They are how health directly impacts the patient. Symptoms may or may be related to a one or many diseases, or may be mysterious.
- Risks - These are sometimes determined by choices of the patient (smoking, drinking) or not (family history). The reason we at all care about smoking or family history is the risk they confer.
- Events - Big events, such as heart attacks or motor vehicle accidents can result from or cause disease, but they are tied together in a temporal way. In the same way, an office visit is a temporal way to tie together interactions with a patient on a given day. (I didn't say it's entirely bad to consider visits as units; it's just bad to only define them that way).
- Situation/Environment - What's going on in the other areas? Is the person getting a divorce? Is it allergy season? Is there a flu epidemic?
- Population factors - some narratives, investigations, interventions, and destinations can transcend a single patient. My ability to see the population as a whole will help me to give better individual care.
Where does this lead?
What does a record in such a world look like? I can't say I've come to a clear idea, but there are some things I've started doing:
- Treating narrative as a separate entity - Whether communication happens via secure message, on the phone, or via email, narrative is narrative. It is the fuel that propels good communication (my listening to it) and by which proper care is given. Lumping narrative with the other areas tends to artificially categorize it. The result is a separate documentation of narrative from exam, intervention, etc. in the record.
- Tying narrative and the other areas together using things they have in common. I have started using diseases, symptoms, risk factors, and events as tags, tagging narrative, consults, lab results, medications, and anything else with these fathers (so I can see all conversations, examinations, lab tests, consults, hospitalizations, etc. related to a person's diabetes, for example, or seeing all other parts related to a specific medication).
- Allowing free-flowing use of tags to give me different views of the same parts of the record. In general, the more perspectives one has when looking at something, the more accurate the picture. This means tagging needs to be simple (perhaps automatic) and robust. It also means that I need to be able to quickly get those views when I (or the patient) need them.
- Working with the patient to come up with a destination - an overall plan of what they expect to get out of my care.
- Going over the progress toward those destinations on a regular basis.
- Making all of this fully available to my patients. This assures the accuracy of the information and keeps it focused where it should be: on the person for whom this whole system is built.
Sounds crazy? Sometimes I wonder. But then I look at what my past life as a doctor involved, and what "care" was defined as, and I begin to grin. That was crazy. This is simply being myself, which, for once, doesn't seem so crazy.
It has been nearly 6 months since I started my new practice, since I took the jump (or, more accurately, was pushed off the ledge) into a brave new world. It seems very distant, like I should get Shirley MacLaine or Gwyneth Paltrow to help me channel my old sad self. It is tempting.
I have a vague recollection, a memory shrouded in mist, where I pondered what seemed like a radical question: What would a health record look like if my only concern was patient care? This was a radical question because in my previous life I was an electronic health record aficionado. I was good at EMR, which meant that I was really good at finding work-arounds:
- How can I work around the requirements for bloated documents and produce records that are actually useful? The goal of records in that previous life was to justify billing, not for patient care.
- How can I work around the financial necessity to keep my schedule unreasonably full and keep my visits unreasonably short and still give good care?
- How can I work around the fact that I am paid better when people are sick and still try to keep them healthy?
- How can I work around the increased amount of my time devoted to qualifying for "meaningful use" and still give care that is meaningful?
Computers were all about automating the drudgery, organizing the chaos, and carving out a sliver of time so I could spend the extra minutes needed to give the care I wanted to give. I was using them to give good care despite the real nature of the medical record: a vehicle for billing.
But that was my past life. Now I no longer have to worry about a Medicare audit (and the looming threat of an accusation of "fraud" for simply not obeying the impossible documentation rules). I no longer have to keep my office full and my patients sick enough to pay the bills. I am actually rewarded for handing problems early, for communicating well, and for keeping patients healthy and happy, as it keeps them paying the monthly subscription fee.
Ironically, in asking the question, what would a health record look like if my only concern was patient care, I was really asking the question: what does "meaningful use" of the record really look like? Now this question is no longer a hypothetical; it is real. My rejection of EMR systems that catered to my previous needs and my quest to build one that fits my current needs have given me the chance to work very hard at answering that question. The success of my practice, and the success of other practices like mine, will depend on our ability to answer that question. I am now in a system that actually values communication, prevention, and organization, so I no longer need computers for work-arounds; I need computers to help me reach those goals.
As I've spent an enormous amount of time and energy (a.k.a. obsession) on my own system, I have come up with unexpected opportunities:
1. Abandon the artificial centrality of the office visit.
The care I gave in my former life was held hostage to the office visit. This is not only (as I have mentioned before) the unit of commerce, but the unit of documentation. Even in my new practice, where I am no longer loathe to give time and information outside of the office visit, I still am drawn to this unit of documentation. Why? Isn't in-office care merely one of many communication options? Isn't it part of a continuum of communication happening over time? Why should I separate the phone call earlier in the day from the visit that phone call prompted? Why should I wait until they are in the office before getting a history?
An example came a few weeks ago when a patient injured her finger. She has close contact with a dentist, who offered to get an x-ray of the hand. I got a secure message with a jpg attachment of that x-ray, revealing a fractured bone at the end of the finger. I messaged her back, telling her what to do about it, including my nurse on the message, asking if we had purchased splints when we started the practice. We hadn't, and so Jamie ordered them, notifying the patient when they arrived. The patient spent a total of 5 minutes in my office, but the care extended over several days.
This scenario has repeated itself in other forms, including: diaper rashes that don't heal (more pictures), intermittent abdominal pain, new-onset diabetes treatment, and post-lumbar puncture headaches. Attending to these problems as they happen (instead of requiring office visits) is far better for both patients and me. My availability to help patients in this circumstance lets me handle problems while keeping my office empty, while my empty office enables me to have the time to answer these questions (without the previous angst over lost revenue).
So how do I document this? The records of my former life didn't consider such questions, but my new freedom brings this issue front and center.
2. Embrace Simplicity and Organization
When dealing with such problems, the focus is not only on communication, but informed communication. Since I am not forced to gather all of the facts at an office visit (a truly impossible task for both doctors and patients), I need to have a better way of keeping track of things. I have to have a record that immediately tells me what I need to know about the person with whom I am interacting. The best decisions are made with the clearest picture of the situation, and I need a record that gives me that picture as efficiently as possible.
This is a far cry from my former life, where I was forced to include massive amounts of E/M vomit in every note to justify billing. The facts were hidden in the medical record, not revealed by it. What was the penalty for not having all the information I needed or for the bad decisions that were the result? Patients stayed sick, came back to the office, and I got paid more.
So, I have been forced to find new ways of organizing information. When I look at a person's medical condition or a specific symptom, I want to have access to:
- All medications related to it.
- All encounters where it was addressed.
- All associated testing, procedures, surgeries, and hospitalizations.
- The opinions and contributions of other doctors on the issue.
- A clear idea of it's impact on the patient.
I want this information with as little work as possible so my communication can be as efficient and effective as possible. It's been a tough task, but I think I've found a way to do this without demanding extra work.
3. Give that record to the patient
I am not the only one who needs good information; the patient is an equal participant in these conversations, and the one with the most to gain from good decisions. The only solution I can see is to put this information where it belongs: in the hands of the patient.
If I had embraced this idea fully in my previous life, I would have been faced with a problem: the medical records sucked. The useful information that happened to be present in the record was buried in piles of coding compliance refuse, obscured by reams of superfluous data. Our records were better than most, and yet sharing them would reveal to our patients how little time was spent keeping them organized and accurate. We simply had more important things to do: things that paid the bills.
Creating a truly meaningful and useful record has not simply been something I've done for myself; my ultimate goal is to not only give them to the patient, but to invite them to help me in the never-ending task of keeping them organized and updated. My job will be to curate that information, as I better understand which parts of the information should be emphasized, and which should be available when needed.
I've got more points to make, but will let that go to another post. The point I want to make clear is this: the radical change in my payment model has forced an equally radical change in the systems that support that model. I can't put new wine in old wineskins. The medical record of my past life was built to help with the problems inherent in that sad existence, and they served to amplify the sadness of that existence. Now living in a much happier, patient-centered world, I can build something that will increase that goodness and happiness.
Sorry Shirley and Gwyneth. I think I will stay where I am.
There was a hole in the wall of our bathroom that was a painful reminder of a bad encounter with a plumber. Yes, that hole has been there about a year, and it has been on my to-d0 list for the duration, daring me to show if I inherited any of the fix-it genes I got from my father. Why not hire someone to come fix it? I also got (as I mentioned in my last post) dutch genes, which scream at me whenever I reach for my wallet. So this hole was giving me shame in surround-sound.
I attempted to fix it the hole last year, even going to the degree of asking for a router table for my birthday. Since there was previously no way to get to this all-important access to the shower fixture without cutting through the sheetrock, I decided I would take a board, cut it larger than the hole, then use the router to make a rabbet cut so the panel would fit snuggly. Up until then, I thought a rabbet cut was a surgery to keep the family pet population under control, but my vocabulary was suddenly expanded to include words like rabbet, roundover, chamfer, dado and round nose. Unfortunately, my success only came in the realm of vocabulary, as I was not able to successfully master the rabbet cut without making the wood become a classic example of the early american gouge woodworking style.
I am not sure why, but something inside me told me today was the day to give this another shot, and to my shock (and that of my family), I was successful!
Yes, there still is a minor wallpaper issue, but note the total absence of gouges!
Also note this fine example of the roundover cut.
This home project is actually a late comer to the DIY party I've been holding for the past few months.
- Don't like your practice? Build your own from scratch!
- Don't like the health care system, build a new one!
My latest DIY venture is in an area I swore I'd not go: I'm building my own record system.
There are several reasons I've avoided doing this DIY project:
- If I fail, I've wasted a bunch of time I should have been building my practice.
- If I succeed, I don't just have a practice to manage, but a piece of software.
- I tend to get obsessed with details, losing hours coming up with elegant solutions to problems for which simple solutions are available.
- It requires that I spend far too much time thinking about HIPAA and security issues. I hate that kind of thing. It bores the socks off of me. I fell asleep three times while writing this bullet point (and I have no socks).
Business is good; we are up to 250 patients and are managing the volume pretty well. But I've had to keep a cap on growth while I figured out what system I would use to run the practice. Obviously, EMR systems designed to produce enough E/M vomit to scare away Medicare auditors don't fit with my business plan. Other systems seem to have become so obsessed with "meaningful use" that they don't do basic business functions. Expecting a system designed to work with the Economics Through the Looking Glass of American healthcare to function in the real world is folly, and so I had to choose: do I stay with my current non-system and let the quality of my care suffer, do I keep growth of the practice to a minimum, ignoring the reality of 3 kids in college next fall, or do I give in to the belief that I know what I need and can build a computer system that will work with my type of practice?
I decided on what's behind curtain number 3. Unfortunately, this all happened just as I agreed to an interview with a local TV station - an interview that went viral and now has people as far away as Idaho and San Francisco wondering if they can be my patients. Now the pressure is really on to make this thing work. I can no longer be indecisive; I will either live by the database or die by it.
So far, it's been going well. Despite a few "unfortunate" moments where I deleted all records of everything (thank goodness for paranoia about backups), I have broken the code of working with a relational database, and my nature as an internal medicine problem-solving nerd has served me well. In truth, this is not much different from what I did with the EMR system at the old practice.
- I think about where the greatest pain is for me and my nurse, and fix those problems. Where can time be saved, and jobs be made simpler?
- I think about where the greatest risks for patients are, and fix those problems. What things are easily forgotten or missed? How can I set the system up so it assures the safety of my patients?
- I think about where I want to go with the practice in the long run, and set up a system that will set us up to go in those directions when we are ready.
- I think about the questions I ask myself when dealing with a patient, the information I want to know the most, and put that information in a place where it's easily accessed.
In reality, the software borrows heavily from software real businesses use:
- Contact Relations Management to keep track of interactions with customers (patients)
- Business financial management to keep track of costs and of who has paid (and who hasn't)
- Document management to handle the reams of information flung at me on a daily basis.
- Task management to keep important tasks in front of me and my nurse (and eventually patients)
- Spreadsheets to organize numbers
- Reminders to tell when important things are due
- Communications systems both between office staff and with patients
It's really a hybrid of all of these, with the additional plan to securely share much of the data with my patients online. My hope is to build something good enough to get the interest of someone who actually knows what they are doing in writing software. I know what problems need to be solved, and am learning much about how a good database program can do that (I am using Filemaker Pro because it's cheap, it's easy, and it works on both Macs and Windows), but I know my limitations.
I still have no desire to become a software tycoon. I am doing this only because it's the only way I could see to make this practice work. The practice is still at the center of my motivation. If it doesn't help me serve my patients better, I won't do it. The amazing thing is that we used it all of last week and my nurse didn't quit. That's a good start, but the real test comes this week, as we take on the barrage of new patients brought on by our recent publicity.
I'll keep you posted.
What is "Patient Engagement?" It sounds like a season of "The Bachelor" where a doctor dates hot patients. It wouldn't surprise me if it was. After all, patient engagement is hot; it's the new buzz phrase for health wonks. There was a even an entire day at the recent HIMSS conference dedicated to "Patient engagement." I think the next season of "The Bachelor" should feature a wonk at HIMSS looking for a wonkettes to love.
Here's how the Internets define "Patient engagement":
- The Get Well Network (with a smiley face) calls it: "A national health priority and a core strategy for performance improvement."
- Leonard Kish refers to it as "The Blockbuster Drug of the Century" (it narrowly beat out Viagra) - HT to Dave Chase.
- Steve Wilkins refers to it as "The Holy Grail of Health Care" (it also narrowly beat out Viagra) - HT to Kevin MD.
- On the HIMSS Patient Engagement Day, the following topics were discussed:
- How to make Patients Your Partners in Satisfying Meaningful Use Stage 2 Objectives; Case Studies in Patient Engagement, session #64;
- Review Business Cases for Implementing a Patient-Centered Communication Strategy and Building Patient 2.0, session #84;: and
- Engaging People in Health Through Consumer-Facing Devices and Tools, session #102.
So then, "patient engagement" is:
- a strategy
- a drug
- a grail (although I already have a grail)
- a "meaningful use" objective
- something that requires a business case
- something that requires "consumer-facing devices and tools" (I already have one of those too).
I hope that clears things up.
So why am I being so snarky about this? Why make fun of a term used by many people I trust and respect? I was recently discussing my ideas on a communication-centered medical record with a colleague. At the end of my pontification, my friend agreed, saying: "you are right; communication is an important part of health care." I surprised him by disagreeing. Communication isn't important to health care, communication is health care. Care is not a static thing, it is the transaction of ideas. The patient tells me what is going on, I listen, I share my thoughts with the patient (and other providers), and the patient uses the result of this transaction for their own benefit.
But our fine system doesn't embrace this definition. We indict ourselves when we talk about "patient engagement" as if it's a goal, as it reveals the current state of disengagement . Patients are not the center of care. Patients are a source of data so doctors can get "meaningful use" checks. Patients are the proof that our organizations are accountable. Patients live in our "patient-centered" medical homes.
Replacing patients as the object of our attention (and affection) is our dear friend, the medical record. We faun over medical records. Companies earn epic profits from medical records. We hold huge conferences to celebrate medical records. We charge patients money to get to see their own medical records. We even build special booths (portals) where patients are allowed to peer in through a peep hole and see parts of their medical records.
This is why I've had such a hard time finding a record system for my new practice. I want my IT to center on patients, but medical record systems are self-absorbed. They are an end in themselves. They are all about making records, not engaging patients. They are for the storage of ideas, not the transfer of them. Asking medical records to engage patients is like asking a dictionary to tell a story.
The problem is, documentation has taken over health care. Just as the practice of a religion can overshadow its purpose: the search for God, documentation chokes out the heart of health care: the communication of ideas . It did this because we are paid to document, not communicate. Communication takes time and it is not reimbursed. Communication prevents unnecessary care, which is a revenue stream. Communication eliminates waste, and waste is food that feeds the system, the bricks that build the wings to hospitals, the revenue source that pads IT budgets.
So what's a doctor to do? I'm not sure. I am still looking for a solution that will meet the central goals of my practice:
- Communication - health care is a hassle, with communication relegated to the exam room. I want care to be easily accessible for my patients,using IT in one of its strongest areas: tools for easy communication.
- Collaboration - the patient should be engaged, but in a two-way relationship. This means they not only should have access to their records, they should contribute to those records.
- Organization - I want a calendar documenting visits, symptoms, problems, medications, past and future events in each patient's record. I also want a task-management system I share with patients to make sure care gets done.
- Education - I want to practice high-quality medicine, care that is informed by good information and the best evidence. Why not do a yearly stress test? There's evidence for that. Why not use antibiotics for sinus infections? There's evidence there. Why use an ACE inhibitor to control the blood pressure? I need to be able to support my recommendations with data, not just "because the doctor said so."
The point of all of this is the moving of medicine from an industry where money is milked from disease to a communications network where diseases are prevented. "Patient engagement" that is done to the patient for the sake of the doctor or hospital is a sham. Engagement is about interaction, listening, and learning in relationship to another person. Engagement is not a strategy, it is care.
If only I could find the tools to make this happen.
For the record: I am a geek. I love technology. I adopted EMR when all the cool kids were using paper. Instead of loitering in the "in" doctors lounge making eyes at the nurses, I was writing clinical content and making my care more efficient. I was getting "meaningful use" out of my EMR even when nobody paid me to do it. But now who's laughing? While they are slaving away trying to get their "meaningful use" checks, I've moved on to greener pastures, laughing at their sorry butts! It's just like my mom promised it would be. Thanks mom.
Really, for the record, I am not so much a technology fan as a "systems" guy. I like finding the right tool for the job, building systems that make it easier to do what I want, and technology is perfect for that job. I am not so much a fan of technology, but what technology can do. Technology is not the goal, it is the best tool to reach many of my goals. There are two things that measure the effectiveness of a tool:
- Is the tool the right one for the job?
- Is the person using the tool properly?
So, when answering the question I posed at the end of my last post, what constitutes a "good" EMR, I have to use these criteria.
How is technology the right tool for the job? The job I seek to do is not what EMR's are designed for: documenting health care. I want a tool to help me give care. I can afford to focus on giving better care since I am no longer paid to document, which is what the health care system demands of doctors. I spent the past 16 years using a documentation tool for care, which is definitely a mismatch.
What then would a care tool look like? Here are the things I think are most important for good care:
1. Communication over Documentation
While data gets all the attention of IT vendors, health executives, and government drones, it is the communication of that data that constitutes good care. One of my first goals in my new practice is to use whatever tools possible to enable that communication. Standard health care only allows communication in the exam room (although many patients would say that doctors are so focused on documentation that they don't listen there either). Between office visits there is virtual silence from the patient, as if their life is not happening during that time.
I've considered making bumper stickers that say: "My doctor answers my email" or "My doctor answers the phone," with my logo and web address underneath. This is effective because of the insinuated truth that most doctors don't do either. The system dictates this, but good care says otherwise. My patients have been delighted when I answer questions, view the spreadsheets they fill out, and interact with them on a daily basis. It's communication, and tech makes it much easier.
Documentation is OK, as long as that documentation centers on the communication of data, not just the data itself.
Yet even I use the term "medical record," which refers to a static collection of data rather than a tool to allow that data to be used well. Any good health IT system must not simply document the communication, but must enable that communication as to happen easily as possible. This means both getting information from my patients and putting it into their hands. This is why another central goal of my practice is to give patients access to their records. Too much of patient care is done blindly, not knowing what care has been done, relying on the patient to re-recite their medical history. With the proliferation of mobile technology, my patients can bring their medical record with them wherever they go. This, in turn, enables better communication with other providers.
2. Organization of Data
Walking around with a computerized stack of paper, however, is not all that my patients need; they need the information to be organized. This is another of the strengths of IT. An astute commenter on my last post gave a link to a TED talk on the beauty of data visualization, which shows how organizing and presenting data in the right way can make dry data tell rich stories. I want an EMR that shows me a timeline of the patient tagged with their symptoms, medications, lab results, vital signs, and any other pertinent data I want to see. What is the relationship of exercise to your depression? Did that back pain start after you added that medication?
The point of organization is to see through the extraneous to see the meaningful. It is, in essence, another part of communication. As I listen to a patient's story, I ask questions and bring out important details they may have missed, and ignoring that which I know is not significant. This is what makes a good diagnostician, and the ability to this with the volumes of patient data is what would allow IT to improve care.
3. Collaboration, not Ownership
The world of health IT is obsessed with something called "data ownership." This is kind of crazy, as data is information, and information is fluid. How do you "own" information? If I learn a fact, do I "own it?" If I possess a book, does that make me the owner of its ideas? The wonderful world of HIPAA and the threat of identity theft has bolstered the cause of "ownership." Unfortunately, communication of ideas is diametrically opposed to this concept. IT must not be about building walled gardens of data, but about collaborating with that data for the sake of patient care.
I first heard of the term, collaborative health record from Dave Chase (the guy who first told me about my kind of practice), and I really like the concept. The idea is that the ideal patient record is a collaboration between the patient and the caretakers. Patients know things I don't: what meds they've been taking, how they feel, whether they are married, are smoking, or if they had measles as a child. In fact, if you look at a typical note in a patient chart, the majority of the information is originally "owned" by the patient. So why not let them take care of those parts of the record? Why not let them update when they've been to a specialist and had their medication changed? Better yet, why not have the specialist take part in this too, collaborating to make sure the patient got the message correctly?
Why, in fact, do I need to re-create what the patient could do better than me? Why not just look at what they've done instead of transcribing it into "my" record?
This sounds suspiciously like a wiki. What resource on the internet gives useful (albeit sometimes inaccurate) information in a format that elementary school students understand? Wikipedia. Isn't this a better way to organize patient data than a typical EMR?
4. Easy Does It
In considering what I need from IT to give patient care, there is one more thing I need - something that is clearly lacking in most EMR systems: ease of use. I should have seen the writing on the wall when my EMR vendor insisted I pay for 4 days of onsite training before I could use their system. I don't want to learn a new language, and my patients want it even less. Just as a medication a patient cannot afford is useless, a technology a patient won't use is also useless. Tech can go either way on this: either making difficult tasks easy or making simple things complicated. This is where Steve Jobs was right: design simplicity.
I don't want my patients to have a separate log-in for each part of their care. I want a single sign-in and a uniform experience. I want an app that they press which pops up options to "refill my meds," "contact my doctor," "update my record," and "look up a result." I don't want them to need to own certain software or download files. It's got to be easy and well-designed.
Putting it together
So in thinking about this wish list, it occurred to me that there is one company that could deliver all of the goods here: Google. Apple and Microsoft have many of the same tools, but they are far more proprietary in their approach. If I share a spreadsheet with a patient, I don't want to have to worry they own Excel. If I want to do a video chat, I don't want to have to consider if they've got a device that can do FaceTime. Google does email, spreadsheets, video chat, groups, web pages, organizes data, and has lots of cat videos to boot. And all of these services are easy to use and free. Most of them are free.
So should Google get back into health IT? Didn't they already try health IT and fail? Ah, but it's not just having the right tool that is important, it's knowing how to use it.
So, Google, if you really are interested in changing the world for the better, you know where to find me. I suppose I'd be willing to talk.